As a Lymphedema Patient, Beth Israel Deaconess Medical Center Gives Me Hope
Dr. Dhruv Singhal asked me what I wanted. To preserve my leg health long enough to be eligible for any groundbreaking curative therapy. I traveled to Boston as part of that quest.
The meeting with Dr. Singhal, Director of Lymphatic Surgery at Beth Israel Deaconess Medical Center (BIDMC), was the culmination of three days of tests and evaluations designed to give this busy doctor a complete history of my case before we met in person. His time is precious as he works to provide relief to patients with this incurable, often painful, sometimes acute, and commonly hidden chronic degenerative disease. The Sunday after Thanksgiving, my adult son, Kevin, and I departed Washington, DC’s Union Station on the 5:25 a.m. train. I had scheduled our Boston arrival early enough in the day that any snafu would not derail my 10 a.m. intake appointment on Monday.
The lymphatic clinic is on the second floor of the BIDMC Shapiro Clinical Center, so the first-floor receptionist thoughtfully inquired whether I could walk upstairs. Patients with lymphatic disease of the legs often become mobility impaired, so I appreciated her asking. The certified lymphedema therapist (CLT), Emily Muller, retrieved me from the second-floor waiting room and steered me back to her office. Walking behind Emily to the exam room, I felt trepidation that paralleled the pins and needles of neuropathy that sometimes affect my left foot. A Lymphatic Education & Research Network poster on the wall reassured me I was in the right place as I prepared for the measurements and evaluations she would do.
Her questions about the history of my disease progression over the years gave me the opportunity to share just how committed I am to educating myself about lymphedema and employing every available means to
manage it. I’ll go anywhere. I described traveling to Hammamet, Tunisia in 1999 to participate in thalassotherapy and being diagnosed with “heavy legs,” for which manual lymphatic drainage (MLD) was prescribed. Knowledge of this technique is more widespread in the US now, but it was mostly unheard of here in the States back then. For the first time, I experienced noticeable, immediate relief from the congestion and tightness in my legs. Subsequent exercise therapy in seawater introduced circumferential pressure to my legs and furthered the decongestive process by forcing the built-up fluid out of my limbs. In another first, I realized that there were medical professionals who knew how to treat what I had learned from experience to believe was a mystery condition that I would have to manage on my own forever.
At the end of our session, Emily recommended that I get my legs measured for custom flat knit garments to reduce the layers of compression I use daily from up to three layers per leg down to one custom, more compressive layer. Compression is a critical tool for the patient to use on herself for lymphedema management. Other self measures to reduce swelling, maintain skin integrity, preserve mobility, and prevent infection include: daily pumping with a specialized pneumatic apparatus, skin massage with rich moisturizers, self MLD, limb elevation, and exercise. I felt a sense of hope and connection, especially after I mentioned Dr. Corrado Campisi, a pioneering lymphatic surgeon in Genoa, Italy, whom I have followed for several years on social media. Emily became animated as she talked about the team meeting him recently at a convening of specialists from around the globe.
Next came the test I most dreaded: lymphoscintigraphy. Two sites on each foot are injected with radioactive dye (radiotracer) that maps the pathway and speed of lymphatic return from the feet to the trunk, with images being generated by a gamma camera. Because my disease is not cancer related, as lymphedema often is, this test is not tracing tumor involvement, so it is not a grave experience, but it is unsettling nonetheless. The dye’s pH makes it burn going in. The feet’s nerve endings make the experience truly unpleasant.
For a few minutes during the first phase of the test, the machine passed slowly and incredibly close to my face. Unawares, because I held my eyes tightly closed to cope with the claustrophobia, I adjusted my neck slightly to get more comfortable and my face struck the machine passing overhead. My mind scrambled for something to quell the panic, and I desperately wished I had my own music to listen to instead of whatever was coming from the room’s speakers. When I returned a couple hours later for another round, the test’s final phase, the technician let me listen to my own calming music, a Ralph Vaughan Williams suite, as my arms were pinned to my sides.
Lymphoscintigraphy makes me uncomfortable in more ways than claustrophobia and burning injections. Years ago, in 2017, I had ramped up to aggressively seeking more complete answers about lymphedema because the year before, I had been hospitalized with my first-ever episode of cellulitis, an infection commonly experienced by people with lymphedema; I don’t know why I had never heard of this complication. Three mosquito bites on the left ankle and an old, disintegrating blood clot — likely from recent vein surgery, I came to find out — had landed me in the hospital with sepsis. My daughter had rushed me to the emergency department when I couldn’t stop shivering despite it being a 100-degree day. Upon discharge several days later, with a formal lymphedema diagnosis and treatment course outlined, I developed some renewed hopefulness about my condition. I undertook physical therapy for the first time, marveling as a CLT measured my legs and taught me how to wrap them, demonstrated self MLD, and ordered me a pneumatic pump for home use. As I was going through this phase of treatment, my daughter, Portia, first found Dr. Campisi by searching keywords on Instagram. Reading his posts expanded my notion of what was possible. Dedicated physicians were working on this issue and had been for years. Dr. Campisi was premiere among them in using microsurgery to perform vascularized lymph node transfer (VLNT) and lympho-venous anastomosis (LVA). After the physiatrist who was managing my case offered no treatment options after my lymphoscintigraphy, I informed him that I planned to travel to Italy to ask Dr. Campisi for help. Once he heard me praise Dr. Campisi and laud the advanced state of lymphedema practice in Europe, however, he said, “Oh we can do that here.” I have long wondered whether he would have shared that information had I not mentioned Dr. Campisi’s advances in the field.
I received a local referral for VLNT — a five-and-a-half-hour microsurgery procedure where lymph nodes were removed from just behind my right underarm and transplanted to my left front ankle — and had a successful outcome. New lymphatic channels seemed to have opened in my most affected leg and some ongoing congestion relief in the knee area resulted. Improvement was limited, however, and I continued to research options, choosing not to pursue VLNT for the right leg.
In Boston, an MRI and ICG (indocyanine green lymphography) were scheduled, after lymphoscintigraphy, the latter of which required more needles to the feet. Green dye, buffered to reduce intense pain, injected under the skin mapped superficial lymphatic function in real time. Two screens captured the movement, one for me and one for Elizabeth Tillotson NP (Tilly), who wielded the handheld infrared camera while
interpreting the images. With the overhead hospital lighting turned off, the screens revealed little movement. Tilly applied MLD, and the dye moved begrudgingly along channels in the leg with the transplanted nodes, but the action was less in the right leg. She and Dr. Singhal’s nurse, Sarah Thomson, tag teamed with observations and note taking.
We could not do the MRI because a recent procedure possibly left me with an internal metal clip, and the radiologist didn’t want to risk any metal becoming magnetized inside my body. I will have the MRI when I go back in six months for follow-up.
Living with this disease is a daily challenge, one that requires constant emotional stamina and diligent practice to stave off the worst outcomes. I do grow weary sometimes, but I am buoyed when I meet caring professionals who dedicate their professional lives to discovering advances in patient care that give hope to people like me. I will never be free of lymphedema, but some things make it easier to bear. One of those things was a hug from Dr. Singhal.
Special thanks to Dr. Brett Carroll who endured my blurting out, “Pharmaceuticals, baby,” when he asked me how I had lost significant weight prior to coming to BIDMC for evaluation.
